I REALLY Can't Stand a Minute of this Anymore

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Rosettastone
Rosettastone Member Posts: 10
edited October 2014 in Mental Health: Because Cancer Doesn't Just Affect Your Breasts

it has been 4 mos since my dx of BCa.  I am middle-aged with a history of depression since my teens, although recent years have been much kinder.  Then I found the lump, and also opened my "locked" result from 23and me and found I had the brca1 gene.  Things dragged on through no fault of my own, and I finally had unilateral MX? 3 1/2 wks ago with expander inserted.  I thought this would be a piece of cake, but instead i got a huge hematoma (PS managed to slice an artery), surgery had to be redone ASAP and then i was left with a nice-sized necrosis (piece of dead black tissue) on the breast.  I still have one drain in (2 are gone) and i have no idea when it will be removed.  I had 3 levels of LN removed but no instructions on avoiding lymphedema.  Anyway, lastnight i looked up "debridement", basically one method of removing dead tissue, and the results made me sick to my stomach.  I read that beneath the black plaster is nothing but a hole, and if i have it removed i'll just be left with a donut instead of a breast. Other removal methods are somehow being attached to a vacuum cleaner and being eaten by maggots.

I am not sure of my grade, stage, etc.  i thing it is a "bad 2" of some sort.  Invasive ductal 2.3 cm.  same breast, DCIS, microcalcifications.  80% ER receptive, 20% PR. Cells: poorly differentiated but nucleus Grade 2.  I LN positive, 14 mm, extracapsular by > 2 mm.  Margins clean, no lymphovascular invasion.  Referred for chemo, hormonal and rad.  Am being treated at MSK, can't stand it there. The snacks are good, but basically You are just a number & that's half the problem.  I thought of switching but heard it's the same elsewhere.   Just the 21st century idea of hell.

I have seriously thought of turning down any further tx and i wonder if anyone else has.  I know i'm depressed, but otherwise believe i am perfectly in my right mind.  I do have a very nice husband (no kids) so this might seem selfish, but I wonder if it would be possible to talk to him & make him understand my viewpoint.  Uknow, if i'm in tx 5 yrs i will be 60 at the end and probably fall prey to side effects of tx but also other afflictions that affect older people.  My parents lived to old-old age & it was a living hell.  I am not bitter.  I have had my share of good things, why shouldn't my DH & i make it our goal to enjoy the next few yrs of our lives and do everything we wanted to do instead of pissing away our money on med tx (my insurance doesnt cover everything).  I believe i would part happily from the world.

The only Q is, are there doctors who would be supportive of such a plan and give you palliatuve care if you asked for it??

(Sorry to run on)

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  • NineTwelve
    NineTwelve Member Posts: 569
    edited October 2014

    Hey, Rosettastone

    I haven't been here very long, but I thought I would post something just to say, hang in there. You're going through some rough times right now, but you do not have to throw in the towel just yet. You have no metastasis yet, correct? There is hope. There is reason to keep trying to beat this cancer. 

    In time, you might decide not to pursue active treatment, but you do not have to decide that right now. You can take the weekend to think about things, get the information you need, talk to your husband, friends, medical staff, etc. An informed decision, whatever it may be, will give you more peace of mind than giving in to despair.

    Nothing is more exhausting than ill health and fear. I know: it's so hard. If you can't take it one more minute, then don't! Think of something else. Treat yourself to something nice, spend time doing something you enjoy, or just take a pill and fall asleep in front of the tv. Give yourself a break.

    I have to say, the doctors and staff where I am getting treatment are kind and patient, and I do not feel like a number. It's not the same everywhere, of that I'm certain. Maybe you need to get another referral to someplace where you feel like a human being and not just a disease. You are worth it.

    Good Luck to you, and please come back and let us know how you are.

     

     

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  • tangandchris
    tangandchris Member Posts: 1,855
    edited October 2014


    I had some similar issues with my expanders, I had one debridement and while I'm sure the procedure isn't pleasan't I was completely out for it. I ended up with an infection and had mine removed after the debridement. The process of recon did not turn out like I thought it would at all. With that said, I can relate to what you are feeling.

    Before you make any decisions on continuing treatment, you really should learn more about your actual diagnosis. Also, if you are not happy with your doctors, get a 2nd opinion! I urge you to do this, it may seem like an ordeal and it may even be one, but in the long run it is worth it.

    Don't give up on anything until you have all the information. ((Hugs))

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  • MusicLover
    MusicLover Member Posts: 4,225
    edited October 2014

    Good advice, NineTwelve.
    I was going to suggest similar especially do not trust dr. google (as they say) to treat you, go and speak to a wonderful plastic surgeon to find out what your options really are and then see how you feel. Also, don't assume that you will have lifelong se's from treatment - it is impossible to know that for certain.

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  • Kicks
    Kicks Member Posts: 4,131
    edited October 2014

    I have heard of using medical maggots on necrotic tissue as can be less invasive than a knife/scaple. I have also heard of using leaches really bad bruises/hemotomas.  It is a very old technique but does apparently work very good in some cases when other techniques don't.

    I have never felt like I was a 'number' with any of my Drs or nursing staff.

    You say you are depressed - please see a Counselor who is experienced with PTSD.  It is very real (and not only with those with combat time), and anyone can experience it after any traumatic happening in life. A BC DX is traumatic.  Not all Counselor have experience with it though.

    You owe it to your Husband to talk to him, honestly - you owe him that.  I was 63 when DXd - am 68 now and life is fantastic.  I will be on Femara/letrozole 'forever' but that's fine.  I can't do all, I could when I was 20, but it's the years, not IBC, that has changed that.  I still ride my horses, bike, garden, mow, flyfish and many other things.  I refuse not to live every day to the utmost.  Yeah there are bumps in the journey at times but that's what all experience on their life's journey.

    I never thought about not fighting the IBC - I am a fighter so wanted everything possible to fight with.  It worked - I'm NED and 5 yrs post DX - for IBC that's great.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited October 2014

    Rosetta - Girl you have been through the wringer already. I'm sorry. Couple all the healing issues, with the devastation from the dx, the unknowns about treatment,  and the propensity for depression and it is the perfect storm. Kicks' mention of PTSD is spot on. I highly suggest calling your nurse navigator today to find out your options for meeting with a counselor. They can help sort out your thoughts. You may not see it now, but you have a lot of living to do. It is going to be tough for a while but you are not always going to feel like this. It is so hard to climb out of the dark well on your own. Please let us know how you are doing. PM me anytime for any reason.

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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2014

    WONDERFUL advice, all! Thanks for proving why our Community is the most supportive around!

    Rosettastone, in addition to all of this great advice, you may want to check out the main Breastcancer.org site's pages on Depression and Post-Traumatic Stress Disorder (PTSD) for some more tips and advice.

    We hope this helps! Please let us know how you're doing.

    --The Mods

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  • Rosettastone
    Rosettastone Member Posts: 10
    edited October 2014

    Thank you, all you angels, for the replies.  I had to stop crying long enough to write this, but it was a good cry.  Adversity brings out the best in other people.  I made an appt with a med onc from another hospital but i cant say it is making me feel better.  The problem is, when i feel like this, my brain freezes over.  I think what i really need is some spiritual help, but not the organized religion type.  I tried meditation 2yrs ago and it was somewhat useful.  But can another person convince you your life is worth living?  And where would i find such a counselor?

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited October 2014

    Rose, sorry you need our help. 

    My advice is be kind to yourself. One day at a time. It is possible that you have already eliminated your cancer. I would go to the hospital that did your surgery, ask for a copy of your pathology report. I did not get mine until the last day of chemo. 

    You certainly can chose not to accept anymore treatments. I do not think in your case it would be considered pallitivue care. The oncologist will suggest a treatment plan, maybe chemo, maybe not. You only had one node with cancer. That is good. 

    The bumpy road of breast cancer treatments really does suck. I hated all of it. I am a private person generally, it threw me into the hands of the medical community. I was pleased with my care.

    Keep posting, it helps to be able to vent your fears & frustrations, we get it. 

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  • Beatmon
    Beatmon Member Posts: 1,562
    edited October 2014

    I also think you need something else for depression and make sure you are not making decisions when you are in such a saddened state. You have certainly had mire than your fair share...as we all have. Gentle loving hugs.

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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2014

    If you're thinking of meditation or finding a support group, you can check out the main Breastcancer.org site's pages on Types of Complementary Techniques for a full list of options and suggestions.

    Also, the page on Finding Someone Else to Talk to has some good advice.

    Hope this helps, too!

    --The Mods

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  • MerrellGirl
    MerrellGirl Member Posts: 67
    edited October 2014

    Rosettastone,

    Please continue to come back here and be supported.  I too have a predisposition to depression and this diagnosis has been a super challenge in that regard.  I take meds - Effexor to ease hot flashes and xanax to keep my skin from crawling - and I push myself to exercise too.  You did well by posting your feelings. . .you don't sound like someone ready to quit.  You sound frustrated and maybe a little afraid, that's all.  We all feel like that many times.  Sure, stopping treatment is one option, but you have many others, too.  

    Please keep coming back here.  Post, accept others' invites to private message (PM) them.  Cyberhugs to you and to all of us. 

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited October 2014

    I have mentioned this many times but when I was in the black pit I began meeting weekly with a Stephen Minister  from my church. I know you're not looking for organized religion. It was not at all like that for me. My SM is a cancer social worker at a local teaching hospital. She was not preachy, she never once pushed religion on me. She just met me where I was in the dark place, listened as I poured my soul out to her , every fear and disappointment. She took me by the hand  and  stayed with me, no judgement no pressure, until the darkness lifted. Lots of churches have SM programs. SM do receive many hour of training and continuing education.. You could call their main offices in St Louis to find a church near you that has a program. There is no charge, you meet about an hour a week, you decide how long you want to continue going. If it isn't for you then quit.

    It IS so good that you reached out here. That is a good first step towards healing. Gentle hug.

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